Issue Five | November 2007
…because life needn't stop when you're paralysed
This is the Spinal Injuries Association's (SIA) fifth bi-monthly issue of our online bulletin. This is an excellent way to stay up to date with the latest news and events from SIA and the SCI community.
To make sure your family and friends don't miss out, forward this email to someone you know. If you have been forwarded this then make sure you register to receive your free e-clips bulletin here.
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SIA is here to support SCI people and their families from the moment their injury occurs and for the rest of their lives. We offer support and advice to all.
Anyone can have access to our core services such as our Peer Support service and our Advice Line. However, SIA members also receive regular copies of our excellent magazine, FORWARD so why not join to start receiving your copy today.
As a charity we depend on public donations, corporate sponsorship and trust grants, together with a small amount of statutory funding. Anything you are able to donate will help us to continue providing much needed services for SCI people.
29th November 2007 - Going For Gold Marathon Gala Ball, The Bloomsbury Club, London ... more details
29th November 2007 - Aimhigher careers and further study workshop... more details
4th December 2007 - APIL Rehabilitation Conference... more details
2008 Raffle Tickets on sale NOW... Win a Mitsubishi Colt with the new SIA National Raffle!
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As
notified through our website, SIA has lost one of its greatest supporters and
founder Trustees; Alan West, a tetraplegic since breaking his neck in 1951, died
in the City Hospital, Nottingham on 17th October following a stroke.
The news of Alan's death has caused great sadness. Everyone who knows Beryl and Alan can testify to their devotion to one another and to their daughter Diane, her husband Andy and their two children Lizzie and Evie May. Alan was a devoted husband, father and grandfather and will be greatly missed.
Alan was a Trustee of SIA for 33 years and during that time spearheaded and supported many of our causes and campaigns. He was a tireless advocate on behalf of the Association and of individual spinal cord injured people. His knowledge, wisdom and plain good sense will be much missed at Trustee meetings.
Representatives from the SIA Governing Council and SIA staff attended Alan's funeral which was a joyous celebration of the life of an exceptional man.
The Multi-Disciplinary Association of Spinal Cord Injury Professionals (MASCIP) is held its 9th Annual Conference on 15th November at The Albert Hall, Nottingham.
The theme of the day was 'Managing Behavioural Challenges in Rehabilitation – Support for Everyone' with a range of guest speakers and workshops to debate this extremely interesting topic.
Details of the Programme are available from the MASCIP website
We
need more information about how well micro enemas and suppositories work for
people with spinal cord injury. These products make up part of bowel care for
many people but we know very little about how well they work and any problems
they cause. To get this information we need your help! To make the information
useful we need 120 people to participate.
Three Spinal Cord Injuries centres – Stoke Mandeville, Stanmore and Salisbury – and a specialist bowel hospital – St. Mark's, Harrow - are taking part in the study. Even if you don't usually receive care at these centres you can still take part.
The study lasts for 6 bowel management episodes and then you simply return to your usual bowel care. We know that making changes to your bowel care routine is worrying so the study is designed to disrupt your routine as little as possible.
Please contact me if you would like more information or would like to take part – we can't do it without you!
Maureen Coggrave
Another new initiative for SIA is the launch of our new Training Courses called Perspectives. Under the banner of the SIA Academy and with our new Training Officer in place (tetraplegic Jonathan Fogerty), we can now take our message, publicise our work, and raise awareness of the specialist nature of spinal cord injury to a wider audience.
Upcoming courses will be held in Milton Keynes and in the Manchester/Stockport area, with more courses to follow. Click here to read more about this new initiative.
Under our Constitution, all of our elected Trustees must be
full SIA members (i.e. spinal cord injured), which means that SIA is governed by
the same people that it is intended to serve. Trustees serve for a period of
three years, after which they must automatically stand down. However they can
immediately offer themselves for re-election, along with any other SCI member
who wishes to become a Trustee. Where the number of candidates standing for
election exceeds the number of places available, a ballot is held to determine
which candidates are to be elected. Only full members of the Association are
entitled to vote, and in the recently held ballot there were ten candidates
contesting five places.
Those receiving the highest number of votes in the ballot were Judith
Jesky, Alan West, Bart Hellyer, Kelvin Blake and John Borthwick. However due to
the recent sad death of Alan West, the candidate in sixth place has been elected
as the fifth Trustee, that being Darren Hughes.
The result of the election of the Governing Council was formally announced at the Association's Annual General Meeting. This took place on 27th October at the National Centre for Deafblindness in Peterborough.
As it starts getting colder and the leaves start to fall from the trees in earnest there is no doubt that winter is on its way. That's why the Ageing with SCI project has come up with a few pointers to make sure you keep yourself healthy and happy this winter.
Follow the link below to view the Ageing with SCI Winter MOT guide
SIA is producing a series of DVDs to promote our work and to explain to newly-injured people and others what it's like to live with spinal cord injury. We're looking for people of all ages and backgrounds who would be willing and able to talk about all aspects of life with spinal cord injury, from bladder and bowel care to love and relationships, finding a job to going on holiday, and the rest!
The DVDs will be an upbeat and informative look at the realities of
life after spinal cord injury, with an emphasis on what can be achieved - in
keeping with SIA's motto of 'Life needn't stop when you're paralysed'.
The producer of the DVDs, Libby Cross, is herself spinal cord injured and will be happy to explain more about the project - with no obligation on you to take part if you decide it's not for you. On the other hand, if you've got some useful hints and tips for newly-injured people, then this could be your chance to pass them on. Reasonable travel expenses and a small fee will be paid to everyone who is interviewed for the project.
If you'd like to take part in the project, or you would like some more
information, then please email Libby or
write to her at:
Marple Cross Productions Ltd
32 Malvern
Road
SOUTHSEA
Hants
PO5 2NA
The Wheel Life.com is a new community/lifestyle website created for wheelchair users, their friends, families and associations.
Launched in September this year by Grant Logan, a para T5 and his life long friend Pete Kirtley, the wheel life hopes to help make connections between wheelchair users across the world and open people's imaginations to what is still achievable in life. Excited by the explosion of community networking sites around the globe but frustrated by the limitations of their search facilities, Grant & Pete decided to build their own website and dedicate it to just one group of individuals.
Behind every wheelchair user is a story, so why
not share it with the rest of the wheelchair world - build your own profile with
pictures, videos, diaries and more, compare experiences with other chair users
and perhaps inspire someone to do something different today. The Wheel Life is
just that, life on wheels and the journeys that people take on them. By reading
peoples' stories, looking at photos and watching their videos you will hopefully
gain the confidence to venture out and do things you never thought you'd ever do
again. Or simply make new friends across the World. Whichever it is for you,
help build your community and the wheellife today.
The new 2007-08 Solicitors Directory is now available and can either be
ordered through our shop
or searched online.
Also available is our beautiful range of Christmas cards which can now be purchased online.
The cards are available in a range of sizes and designs and a percentage of
each purchase will go towards the Spinal Injuries Association.
Through Manpower, BT is keen to recruit disabled people into their
organisation.
Association of Personal Injury Lawyers (APIL) is a not for profit organization, which campaigns for better laws to help people who are injured or become ill through no fault of their own. The organisation was established in 1990 by a group of lawyers working on behalf of personal injury clients and now has over 5,000 members.
They have recently developed the programme for APIL's brand new 'rehabilitation conference' and are hoping to attract a wide audience of both legal practitioners and also members of other organizations who may have an interest in the field of rehabilitation. The conference is taking place at the Grange City Hotel, London on Tuesday, 4th December 2007 and it is open to both APIL members and non-members. APIL would like to invite members of SIA to register for the event.
Please refer to the PDF flyer for further details.
Latest
in the Library
Overcoming Disabling Barriers
This book provides a valuable route map to the development of thinking in disability studies over the last 18 years. It includes over 20 seminal articles from the journal Disability and Society, written by many of the leading authors in the field from the UK, the USA, Australia and Europe.
Access Anything, I can do that!
A guide to travelling, adventuring, and sporting with a disability. Access Anything, I can do that! dives into the incredible world of adaptive sports and recreation by showcasing 45 different sports that have been adapted for disabled people. This guide also features disability travel information and tips for travelling by airplane, car/rental car, charter bus, cruise ship and train.
Disability & Bioethics
Produced by the British Council for Disabled people (BCODP) and designed to help empower disabled people, this information pack covers many varying topics, from late abortion, infanticide to euthanasia, all examined within the context of disability, with the goal of making disabled people more aware of the bioethical issues which effect their lives.
If you would like to find out more about our library collection then contact Cameron Akitt or visit our website
SIA continues to campaign to persuade the Government to extend the Winter Fuel Allowance (WFA) to disabled people under 60 and we are pleased to have Spinal Injuries Scotland join us in the campaign This issue has recently been raised in parliament but the Government has indicated that they have no plans to extend the WFA to disabled people. As reported by Mick Hutchins in October's FORWARD, further questions to Ministers on this issue are tabled for the next Parliamentary Session. The BBC's Action Network website, where you can email your support, includes the topic. You can also add your name to the E-Petition to the Prime Minister.
Carers will be able to earn more money without losing their benefits. From 1 October 2007, the maximum amount of money that carers in Great Britain will be allowed to earn without losing their entitlement to Carer's Allowance (CA) will rise from £87 to £95 a week after expenses such as income tax and national insurance contributions have been taken into account. This announcement coincided with a press release from Carers UK in which they state that Carers save the UK £87 billion per year.
The Department of Health (DOH) is currently reviewing the prices the NHS pays for stoma and urology incontinence prescription items and the way in which payments for services are calculated.
Through product price reductions, the DOH intends to save £25m a year. The proposals are open to public consultation and more details are available on the DOH website. Although no final decisions have been made, SIA has serious concerns about the potential impact of these proposals on the future provision of products and services to users who rely on them to maintain their quality of life. Manufacturers and specialist nurses have echoed this apprehension. We are working with a range of other organisations representing users of urology appliances and services to communicate these concerns to the DOH and to ensure that any changes do not impact upon patient wellbeing. ( * Please see the Position Statement produced by this coalition). We are committed to finding an outcome which preserves services to all users and ensures the future supply of high quality, innovative urology appliances.
Patient and Public Involvement Forums are to be replaced by Local Involvement Networks (LINks) in April 2008, subject to Parliament adopting the Local Government and Public Involvement in Health Bill. For details of their powers, how they will be set up and how LINKs will operate, visit this website and search for "Local Involvement Networks" LINKs bulletin.
In October the Health Care Commission (HCC) issued performance ratings for every NHS Health Trust in England, showing for the first time whether they are improving the quality of care and making better use of resources. The target is to get "National Care Standards" in place across the NHS - giving patients guarantees on issues such as safety, waiting times and quality of care, regardless of where they live. To access this information visit the HCC website
The Office for Disability Issues (ODI) is taking steps to improve its communications. From November a regular e-bulletin will be issued every two months to people and organisations with an interest in disability;
For details email The Office For Disability Issues
SIA has submitted a response to a Government report published by the Cabinet Office on consultation between government departments and the public. You can access our response on the Campaigning page of SIA's website
The next issue of e-clips will be circulated in January. If you missed out on previous issues of e-clips you can download them here. If you have any comments or feedback about e-clips, please email our Web Panel who are happy to receive your correspondence. If you have enjoyed reading e-clips why not send it to a friend so that they can register to receive their own copy.
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